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The Lyme Wars

…In Which Lauren Explains the Length of this Blog Post

So, first lemme explain.

Though I try hard to keep my blog posts to a small-coffee-length, I quickly learned during my research on Lyme that to talk about the disease without acknowledging its controversial history is a waste of time.  If you want to know about Lyme disease with any intimacy, you must understand its complexity as a diagnosis, as a disease, and as an organism. The more people who can hold a nuanced discussion about Lyme disease, the better off we’ll be.

That being said…

In the world of medicine, there’s nary two words uttered that stir a stronger response than Lyme disease, especially here on the East Coast. Unfortunately, reactions typically include confusion, distrust, fear, and frustration, especially if the conversation turns to chronic Lyme disease (chronic Lyme disease is considered a constellation of persistent symptoms in patients with or without evidence of B. burgdorferi infection).  While there is agreement on the optimal treatment for early Lyme disease, there is considerable controversy over the existence, prevalence, diagnostic criteria, and treatment of chronic Lyme disease.

Sadly, this controversy isn’t contained to backyard chats over black bean burgers and strawberry lemonade, but rages within the field of medicine and divides patients and practitioners alike. Worst of all, it makes it difficult for patients to get guidance from their primary care practitioner if they suspect they’ve contracted Lyme and/or a co-infection, or worse, wonder if they are suffering from chronic Lyme.

It’s a discouraging fact: Many health care practitioners are misinformed about the presentation and treatment of both acute and chronic Lyme, and because of this, patients suffer.

But there’s a reason for this misunderstanding. And it’s very, very complex. In fact, it took me over 100 hours of research (journal articles, books, podcasts, blog posts, and talking to other practitioners) to get a handle on the information and to figure out where I stood on the debate. I dreamed about spirochetes, drove to work listening to people tell their personal stories of Lyme disease, and listened to interviews with experts who vehemently disagreed with one another. The term “Lyme Wars” is…appropriate.

There is little consensus even when it comes to diagnosing Lyme. The the one sure diagnostic sign, the presentation of erythema migrans, also known as a bulls-eye rash, DOES NOT always appear in an infected patient. In fact, according to the International Lyme and Associated Diseases Society (ILADS), fewer than 50% of patients with Lyme disease recall any rash at all. Beyond that, some get atypical forms of this rash, but because it’s not the bulls-eye rash, it’s overlooked.

In other words, lots and lots of people who have been infected with Lyme disease go un-diagnosed, as they never visit the doctor. And some, feeling unwell, do see their primary care practitioner, and are also misdiagnosed.

Dog or cat tick invasion - aka Black legged deer tick
The black-legged tick. The most common vector for Lyme disease.

I’ve learned to be cautious about oversimplifying the presentation of acute Lyme disease (also known as “early Lyme”). See here for a list of these signs and symptoms (I’m including this link knowing that many people will default to the CDC when searching for information on Lyme disease).

See here for an even better list.

The Lyme Wars: IDSA vs. ILADS

So, why does all of this controversy exist?

In the past couple of decades, two opposing views have surfaced in treating tick-borne illness. The Infectious Diseases Society of America (IDSA), maintains that Lyme disease can be treated with a short course of antibiotics and that persistent infection is rare or non-existent. In their view, Lyme is hard to catch and easy to cure. Practitioners who follow the IDSA guidelines reject the term “chronic Lyme,” and argue that without biological proof (a positive blood test or the telltale skin rash) the symptoms of “chronic Lyme” are too diverse and too vague. Some speculate that the lingering symptoms could be an autoimmune response to the original infection, or the result of damage to tissues from the original infection. The preferred term for these persistent or lingering symptoms after antibiotic treatment is post-treatment Lyme disease syndrome (PTLDS).

The opposing view comes from the International Lyme and Associated Diseases Society (ILADS) who argues that Lyme disease is an under-reported and growing problem that often fails to respond to standard antibiotic therapy, resulting in a chronic debilitating infection that requires prolonged antibiotic treatment. To make things more complicated, co-infections, which often accompany the bite of an infected tick, must also be detected and treated appropriately. ILADS uses the term chronic Lyme. They argue that Lyme disease is a clinical diagnosis. From their website:

The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms. Case reports in the medical literature document the protean manifestations of Lyme disease, and familiarity with its varied presentations is key to recognizing disseminated disease.

The “Discovery” of Lyme disease and Ensuing Debate

The debate over chronic Lyme has been raging since the mid-70s, when a cluster of cases originally suspected to be juvenile rheumatoid arthritis was identified in three towns in Connecticut, including the towns Lyme and Old Lyme (hence the name “Lyme disease”). To note: What we know as “Lyme disease” has existed for much longer; it’s suspected that the first detailed account of what is now known as Lyme disease appeared in 1764 in the writings of Reverend Dr John Walker after a visit to Deer Island off the west coast of Scotland. Beyond this, practitioners of Chinese Medicine have been writing about Lyme for even longer. More on that later.

08e4fdf7-1b6d-4784-8868-d224dc881485
Wait, what? You think you might have chronic Lyme disease? Aghhhhh!!!!

The debate peaked in 2006, when the Attorney General of Connecticut, Richard Blumenthal (now a Connecticut Senator) initiated an antitrust investigation into the development of Lyme disease treatment guidelines by the IDSA. The investigation found significant flaws in the IDSA guidelines development process, including uncontrolled conflicts of interest by panel members, a paucity of evidence, over-reliance on the panel’s ‘expert’ opinion, exclusion of competing viewpoints, failure to acknowledge legitimate controversy, and failure to subject guidelines to broad external review or comment.

This paper, titled, “The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines,” published in Philosophy, Ethics, and Humanities in Medicine, is a more detailed look at this antitrust investigation. It’s a fascinating read and the listed references are equally interesting . (Note: The authors of the linked paper serve on the board of directors of CALDA and ILADS, and presented testimony before the IDSA Lyme guidelines review panel.)

The investigation was closed on May 1, 2008, without charges. The IDSA had agreed to submit to review of its guidelines by a panel of independent scientists in 2009. After that? Here’s the summation from Wikipedia:

The IDSA focused on the fact that the medical validity of the IDSA guidelines was not challenged,[33] and cited mounting legal costs and the difficulty of presenting scientific arguments in a legal setting as their rationale for accepting the settlement.[34] A journalist writing in Nature Medicine suggested some IDSA members may not have disclosed potential conflicts of interest,[28] while a Forbes piece described Blumenthal’s investigation as “intimidation” of scientists by an elected official with close ties to Lyme advocacy groups.[30] The Journal of the American Medical Association described the decision as an example of the “politicization of health policy” that went against the weight of scientific evidence and may have a chilling effect on future decisions by medical associations.[35]

Problematic Guidelines for Treating Lyme Disease

And don’t think the controversy stops at this (disappointingly) unresolved antitrust investigation. Even the guidelines on how to treat an acute infection are up for debate. From the blog of Kristen McElveen, a local ND who treats Lyme and chronic Lyme:

Currently, the ILADS recommendation for acute Lyme is a minimum of 6-8 weeks of antimicrobial therapy, while the IDSA/CDC is now even recommending 14-21 days. Unfortunately, many doctors are still only prescribing a single dose of doxycycline, or up to a week’s worth, which is not sufficient treatment, even from an IDSA/CDC standpoint.

And guess what? Also problematic are the blood tests for Lyme. Currently, there are no blood tests that can be considered 100 percent reliable. The only reliable, definitive, diagnostic marker of acute Lyme is the bulls-eye rash, and as mentioned previously, many people will an acute infection will not present with one, or the rash may be atypical and therefore missed.  For an in-depth look at the available diagnostic tests, see here.

The Persistence of Lyme Disease After Antibiotic Treatment?

And as for the question whether some people, even after receiving the accepted treatment for Lyme disease (i.e. they took antibiotics), REALLY have symptoms that persist? A study from Johns Hopkins University found that six months after Lyme treatment, 36 percent of patients reported new-onset fatigue, 20 percent reported widespread pain, and 45 percent had neurocognitive difficulties.

Raises an eyebrow, no?

And wait – check this out. A study done in 2012 showed that after treating monkeys with antibiotics (monkeys that were infected with Bb and showed a disseminated Lyme disease infection) STILL had spirochetes after antibiotic treatment.

In other words: 1). Non-diseased monkeys were infected with Bb, the spirochete that causes Lyme disease. 2.) The monkeys were given antibiotics, which should, according to some theories, have cleared them of Lyme disease. 3.) Non-infected ticks (ticks with no Bb) were allowed to feed from the monkeys. 4.) When those ticks were examined, Bb spirochetes were found.

One of the researches behind this study, Monica Embers PhD, of Tulane National Primate Research Center, was part of a panel on Lyme disease on The Diane Rehm Show. Also on the panel was Dr. John Aucott, assistant professor of medicine, Johns Hopkins University School of Medicine and clinical researcher (who is also the founder and president, Lyme Disease Research Foundation); Dr. Paul Mead, chief of epidemiology and surveillance, Lyme disease program at Centers for Disease Control and Prevention; and Pamela Weintraub senior editor, Discover Magazine and author of “Cure Unknown.”

To hear that episode, see here.

Stephen Harrod Buhner’s book, Healing Lyme, is one of the most informative, well-researched books I’ve come across in my search to learn more about Lyme; the references in the bibliography are extensive, with over 3000 citations. In his first chapter, Welcome to the Lyme Wars, he shares his thoughts on the existing controversy.

Feelings have regrettably reached religious intensities among many. It has become, in most instances, a rather vicious conflict between different groups of specialists, all with differing paradigms, in all possible combinations: medical/medical, medial/herbal, and herbal/herbal. Caught in the cross fire are those with Lyme disease who are trying to understand what is happening to them and struggling to discover how to best deal with it. This is, in my opinion, reprehensible. The point, as too many healers have apparently forgotten, is finding the most effective way to help people heal. The purpose is not to be right about one’s pet treatment regimen or belief paradigm.

A broad review of thousands of peer review journal papers on Lyme disease rather easily reveals that much of the conservative medical world’s treatment is not based on any real understanding of the disease. It is, unfortunately, often based not on evidence or a clear understanding of the disease organisms in question but merely researcher or physician opinion. As Lee and Vielemergy (2011) comment in their review of the Lyme treatment guidelines promoted by the Infectious Disease Society of America (IDSA) between January 1994 and May 2010, “More than half of the current recommendations of the IDSA are based on level III [i.e., personal opinion] evidence only. Until more data from well-designed controlled clinical trials become available, physicians should remain cautious when using current guidelines as the sole source guiding patient care decisions.”

Also, see here for a succinct explanation of the controversy, according to The Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center. Their mission statement speaks volumes:

The Lyme and Tick-borne Diseases Research Center was established as the first academic research center in the country to focus multidisciplinary research on chronic Lyme disease.  In recognition that a growing number of patients experience ongoing or relapsing symptoms after having been treated for Lyme disease, in recognition that diagnostic tests often do not provide definitive information regarding the presence or absence of infection, and in recognition that there are multiple possible mechanisms by which symptoms persist, the mission of this center has a particular focus on identifying better diagnostic assays, better treatments, and a better pathophysiologic understanding of the mechanisms of symptom persistence.

Prevalence of Lyme disease

And at the risk of sounding like a broken record – guess what? The debate does not stop here.

The prevalence of Lyme disease is even controversial. In 2009, the C.D.C. reported 38,000 cases (three times more than in 1991), but many researchers argued that the true number of infections was five to ten times higher than that number. And in fact, in 2013, the CDC changed their estimate.

This particular piece, written by Michael Specter in 2013 and published in the New Yorker, is an attempt at an overview of the existing controversy; in the article, he consults with various Lyme experts who disagree with one another. (In my opinion, the most bullish and unsophisticated of all the interviewees happens to be the chief of the division of infectious diseases at New York Medical College, and the lead author of the IDSA’s guidelines for Lyme). Near the end of his piece, Specter wraps up his story on Lyme with a captivating but troubling comparison of current day Lyme activism with early AIDS activism.

Meanwhile, the scientists sometimes seem to respond more comfortably to data than to people. Researchers at the N.I.H. are pursing several lines of inquiry, including the possibility of bacterial persistence. The atmosphere resembles that of the early days of AIDS activism, when many of the individuals most at risk lost confidence in their doctors and sought their own medical answers. In the end, organizers of ACT UP and the Gay Men’s Health Crisis became well known for their public protests, but they succeeded for another reason: they did their homework. Nobody was more knowledgeable about the course of H.I.V. infection than the best-informed activists.

What Does the Research Say?

If you want to start reading the research, I’ve found the following open access journal papers to be very informative.

(Of note: Pamela Weintraub’s book, Cure Unknown: Inside the Lyme Epidemic, is a book known for impeccable research and captivating investigative journalism. Weintraub is Executive Editor at Discover magazine whose son became ill with Lyme disease).

Anyway – here’s some research for you.

Berndtson, Keith. Review of evidence for immune evasion and persistent infection in Lyme disease, International Journal of General Medicine (2013) 6:291-306.

The last paragraph of this paper?

Based on well-designed post-treatment animal studies and ongoing delineation of Bb’s mechanisms for host immune evasion and persistence, we can reasonably conclude that some, possibly many, chronic LD patients suffer from symptoms related to persistent infection with Bb. As inevitably happens in the evolution of scientific ideas, new research proves that the reality is more complex than we thought, and the time has now come to move beyond the divisiveness of the past into a more reality-based paradigm for research, education, and patient care. The question is no longer whether LD can survive an antibiotic challenge in order to become a persistent infection. High quality studies show not only that it happens, but they also show how it happens, and why we should not feel surprised that it happens. Our task in the new era is to determine which patients suffer from persistent LD, and to keep pressing for evidence-based wisdom to guide the physicians called upon to treat them.

This paper is also very informative.

Borgermans, L. et al. Relevance of chronic Lyme disease to family medicine as a complex multidimensional chronic disease construct: A systematic review, International Journal of Family Medicine (2014) volume 2014. From this paper:

There is growing and well-documented evidence to the concept of persistent Bb infection in both animals [2131] and humans [3241]. Recent evidence shows Bb is able to escape from destruction by the host immune reactions, persist in host tissues, and sustain chronic infection and inflammation, despite aggressive antibiotic challenge [32, 35, 36, 4244]. An estimated 20% of patients display recurrent symptoms after antibiotic treatment [45]. A recent study showed that, at six months following antibiotic treatment, 36% of patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties without evidence of depressive symptomatology [46]

 

This is the first post in a 4-part series. The next three posts, in order, are:

Lyme disease: Overview

Lyme Disease: Testing and Diagnosis

Lyme Disease: Treatment Options and Resources

 

 


Insurance Coverage for Naturopathic Medicine?

Insurance for NDs in Maine: Fact or Fiction? Grunge rubber stamp with the name and map of Maine, vector illustration

Insurance coverage for office visits with Naturopathic doctors (ND) is relatively new to Maine. Although coverage went from non-existent to partial over the last few years, it remains incomplete.  Currently, the following insurance plans cover ND services in-network: Maine Community Health Options (MCHO) and Anthem/Blue Cross Blue Shield.  This is big news for many individuals in Maine who value and utilize the services of NDs!

Unfortunately, Harvard Pilgrim and Aetna remain lacking in their coverage of ND services. Harvard Pilgrim and Aetna refuse to allow NDs to become in-network providers, though some Harvard Pilgrim plans accept NDs as out-of-network. However, usually an out-of-network deductible is significantly higher than the in-network deductible, making this almost the same as non-coverage. Aetna goes a step further and refuses to acknowledge NDs as medical providers, effectively squashing any submitted claim at the outset.

What’s the big deal?

Firstly, lack of coverage interferes with an individual’s ability to fully utilize their dearly purchased health insurance by receiving reimbursement for valid healthcare services.  Secondly, it’s in direct violation of the Affordable Care Act (ACA) AKA Obamacare. The ACA section 2706, titled “Nondiscrimination in Health Care,” requires insurance companies to cover services by any licensed provider acting within their scope of practice.

A group health plan and a health insurance issuer offering group or individual health insurance coverage shall not discriminate with respect to participation under the plan or coverage against any health care provider who is acting within the scope of that provider’s license or certification under applicable State law.*ACA effective 1/1/2014.

Refusing to cover services provided by NDs that would normally be covered by MDs/DOs/NPs violates this section of the ACA.

Will all my visits to an ND be covered?

Ideally, insurance companies would cover all ND health services, but this isn’t the case.  In fact, many patients experience denial even for services provided by MDs.   However, preventative services (ex. annual exams) fall under the category of medical necessity and insurance companies must cover them according to the ACA.

Therefore, at the very least, annual exams, paps, clinical breast exams, etc. performed by NDs should be covered by Aetna and all insurance companies in the state of Maine. This isn’t happening. Aetna is refusing to acknowledge NDs as providers despite the fact that NDs are licensed in the state of Maine.

What can I do to change this? Hand writing Take Action Now with marker, business concept

The Maine Bureau of Insurance (BOI) is responsible for enforcing the ACA and making sure insurance companies follow the law. Unfortunately, as of yet, they’ve been ineffective in altering Aetna’s stance.

This is where you come in.

The BOI needs to know how many people are being affected by Aetna’s denials. If each person who experiences discrimination of coverage by Aetna (or any insurance company) submitted a complaint to the BOI, things would likely change.

If you have Aetna and/or Harvard Pilgrim and are denied coverage for ND services then please submit a complaint to the BOI.

To submit a complaint, go to the following website and follow the directions:

http://www.maine.gov/pfr/insurance/complaint.htm

Things can change but it requires the voices of many!


The Spleen

Last Wednesday I walked down to Monument Square to check out the Farmer’s Market. The tables were literally spilling over with bounty – fruit, vegetables, flowers, bread, cheese, and millions of other things that delighted all the sensory organs on my face.

As I was perusing the produce of one local vendor, I noticed that she had put out a bowl for sampling – fresh corn and cherry tomatoes.  I grabbed a quartered cob and bit in – I’d never tasted corn that hadn’t been boiled or grilled, and I was shocked when what I can only refer to as !CANDYWATER! exploded from the kernels. It was like…it was like…OMG

“A vegetable!” sang my spirit, “A vegetable that tastes like dessert!!!”

And right at that moment, in the midst of my corngasm, the bluegrass band launched into an uptempo version of This Land is Your Land, vendors began leaping through the air, and customers set down their non-plastic bags to lock arms with strangers – Farmer’s Market Flash Mob!!!

Okay, okay, the Flash Mob didn’t happen. What actually happened was that my 10 month old reached up and snatched the corn right out of my paw. She gnawed on it for the next hour, obsessed with prying each candy-like kernel from the cob.

Late summer, earth, balanced, rounded, yellow, nourishment, sweetness, singing – these are all words associated with the spleen. The spleen, as I hope you’ve gathered by my slightly ridiculous anecdote, has everything to do with our relationship with food, pleasure, and nourishment.

The Spleen’s Physical Realm

According to TCM, the spleen is the organ in charge of transformation. It allows us to literally and figuratively digest and assimilate the world around us (in the form of food and life experiences).When you hear the word “spleen” in the context of TCM, don’t be tricked into thinking about the organ that sits in the upper part of your abdomen. Instead, when you hear the word spleen, think about your relationship with food. How nourished do you feel by the food you eat? Do you experience TBB (total bowel breakdown) when you get stressed? Do you often eat in a hurry, in the car, stuffing french fries down the gullet? Do you ever make time to eat carefully prepared meals with the people you love? Do you fart all the time, and avoid accountability. You do??? Shame on you!

Nourishment is a great word to describe the job of the spleen. It’s a great word because it not only describes the nourishment that we get from the food we eat, but the nourishment we get from life itself – which leads us into the equally important emotional aspect of the spleen. This organ is also directly related to our ability to love ourselves and be nurtured by others.

Julia Child encompasses all that I know and love about healthy spleen qi.
Julia Child encompasses all that is wonderful about healthy spleen qi.

The Spleen’s Non-Physical Realm 

Who is the most gentle and nurturing person you know? And by ‘nurturing’, I don’t mean the kind of person who takes care of others begrudgingly, and at the expense of their own energy. I mean the kind of person who is naturally friendly, a magician in the kitchen, and whose all-encompassing bear hugs make you feel momentarily safe and loved in this big unpredictable world. Is it your granddad? Your mom? Your neighbor or friend? Whomever that person is – they probably embody the earth element.

The Spleen governs our feelings of concern and love for ourselves and others. Now… I’m going to say something that might make ya’ wanna smack me – but we must first love ourselves. We all know this is true, yet is seems to be one of the hardest things to do when that nasty little voice inside your head acts up and starts calling you names. Alas, don’t be discouraged! Cultivating spleen energy will help you muzzle that self-deprecating pain-in-the-arse that lives inside your head!

The Spleen also houses the power of Thought, which includes the power to concentrate and absorb information. The thought process essentially mimics the digestive process (we take in information, extract what is useful, and discard the rest). Overthinking, no matter the quality of the thought (and this can include anxiety and rumination), can damage the Spleen. Complaints like “muddled thinking” or a “foggy head” are often imbalances with this organ/meridian. If you are reading this, and saying to yourself: “Hey, MY head feels like it’s stuffed with damp cotton balls!!! Well, then, it’s time to head on in to Wildwood Community Acupuncture for a visit.

In general, a balanced Spleen helps us to feel safe and comfortable in our own skin. The mind is clear and the digestion is efficient, and there is energy to last the day. Though we experience the ups and downs of the life, we continue to cultivate compassion for ourselves and others.

I know. I know. Of course this isn’t what every day looks like –  and if it did, we’d be like the Cylons from Battlestar Galactica. We are human, which means we experience imbalance, and we experience it often. But remember – there are lots of ways to bring yourself back into balance when you feel off – and when it comes to the Spleen, the first thing you can do is to cultivate the Earth element, which means you can try to restart your day from a place of self-love.  Or you can just think of me at the Farmer’s Market, my molars crashing down upon those round yellow kernels whose sweetness brings instant nourishment and happiness, while in the background, a Farmer’s Market turns flash mob.

And if imagining my corngasm doesn’t work for you, you could simply watch this and have a laugh. Because laughter is good for everything.

If this article peaked your interest, see 10 Ways to Balance Your Spleen for more information.